Transcript  

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Dr. Clifford Hudis: Welcome to this ASCO in Action Podcast, brought to you by the ASCO Podcast Network. This is a collection of nine programs covering a wide range of educational and scientific content and offering enriching insights into the world of cancer care. You can find all of ASCO podcasts, including this one, at podcast.asco.org. The ASCO in Action Podcast is ASCO's podcast series that explores policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals we care for-- people with cancer. 

My name is Clifford Hudis, and I am the CEO of ASCO, as well as the host of the ASCO in Action Podcast series. For today's podcast, I am delighted to have as my guest Dr. Robert Miller. Dr. Miller is the medical director of ASCO's CancerLinQ initiative. And as many of our listeners know, CancerLinQ is a big data technology initiative that collects and analyzes real world cancer care data from multiple health care IT systems seeking to deliver insights to physicians, improve quality of patient care, and support new research. 

What our listeners may be less familiar with is that, earlier this year, ASCO and CancerLinQ announced a very exciting collaboration that has the potential of bringing the oncology community one step closer to our goal of achieving interoperability amongst electronic health record systems. The project is called mCODE. That's a lowercase m and then capital C-O-D-E. It stands for Minimal Common Oncology Data Elements, or mCODE. 

Dr. Miller is going to tell us a whole lot more about this important initiative. And I welcome you. Thanks for joining us, Dr. Miller. 

Dr. Robert Miller: Thanks for having me. 

Dr. Clifford Hudis: So, we've all heard about the inability of electronic health record systems to share information with each other. And I always, at the beginning of this, used to talk about my favorite proverbial story. A patient is discharged from a big-city emergency room after a month in the hospital. That hospital uses a single electronic record system, all the details are there. The person is on their way home and developed chest pain, ends up in a neighboring emergency room a mile away. And in most cases, how much of their record from the hospital where they spent a month, to the hospital where they're finding themselves in the emergency room, is transmittable at that moment? 

Dr. Robert Miller: Yeah, I think that's an important question. And that's an example that I think we all have had experience with ourselves personally in health care, or their families. And it's easy to say, well, that's because the systems don't talk to each other. To answer your question specifically, it's probably a small percentage, a minority. There are certain laboratory values and other things that may make it across, but a lot of the important information is missing. And it's just not easy to get. 

Dr. Clifford Hudis: Well, if they're in different health care systems, and even sometimes if they have the same health record system installed, sometimes there's essentially no real transmission possible. And I mention that only because I think outside of medicine, people who are less familiar with this expect this to work like banking or airline reservations. They expect transmittal of the entire package of relevant information at that moment's notice. And unfortunately, sadly, in modern medicine, and indeed in oncology, we don't yet have this. And I'll just close this little editorial soliloquy by pointing out that Congress thought they were supporting the development of this when they passed HARP legislation more than a decade ago. But in fact, the reality isn't that. And that is the setup for what we're really going to talk about now, isn't it? Which is how mCODE can help fix this problem. 

Dr. Robert Miller: Exactly. 

Dr. Clifford Hudis: So, tell us a little more now that we've set up the problem. How is mCODE able to begin to address this issue? 

Dr. Robert Miller: So, I think it's important to realize that while all medical care is complex, there's a certain level of complexity in oncology given the explosive growth in knowledge and a lot of the new therapies even in the last five to 10 years. But I think what is really underlying the source of the problem is the fact that so many of the important parts of the cancer patient journey are just not entered into electronic records in a way that they can be easily retrieved. 

So what I mean by that is things like measuring the cancer stage, or the basic biomarkers, or in the pathology report, or in the blood, and certainly more abstract concepts like, is the cancer growing or not, is the patient getting worse, or are they getting better, and so forth. The outcomes, the adverse events, are put in the electronic record in a variety of incompatible ways. 

And that's not really through, necessarily, anyone's fault or the way things were designed. It's because the electronic record today looks very much like the paper record of yore. And largely, this type of information is captured in what we call an unstructured note, or a document, so that the clinician either dictates, or types, or just puts in text that tells a story. And that's important to tell the story, but it's not easy for a computer to retrieve that information. 

Dr. Clifford Hudis: And the real point is, at scale, you can't take 1,000 patients and consolidate some of the basics into a single file that you could then interpret, right? 

Dr. Robert Miller: That's right. The problem is that you can try. You can take human beings--we call this abstraction, or curation--and you can pull out the data elements from the notes and from the stories, but that doesn't scale. It's incredibly expensive, and it's also very inaccurate. 

Obviously, there's a very big problem here. Tell us a little bit about how this actually came to be. 

The mCODE project started last year in 2018, and there was the alignment of a number of individual work streams. So, let me just say that, as background, ASCO had already been active in the area of data standards going back <sp